Any one diagnosed with DADS-I? Or Poems Syndrome?

Tagged: 

Viewing 6 reply threads
  • Author
    Posts
    • #8536
      Anonymous
      Inactive

      Hi, I am new to the group and wondering if any of you have been diagnosed with CIDP-sub type- Dystal Aquired Demyelinating Syndrome Ideopathic?

      Also any one wrongly diagnosed with CIDP and now told they have POEMS Syndrome?

    • #117246
      Tamme Cowan
      Participant

      I was diagnosed with DADS one year ago. Your post is so old now I’m wondering if you will get my reply
      If you do that would be great.

    • #117247
      Jim-LA
      Moderator

      One of the experts on Distal Acquired Demyelinating Symmetric neuropathy (DADS) is located in LA at Cedars-Sinai, a Center of Excellence. Here is his latest article that covers the variant:
      https://www.uptodate.com/contents/chronic-inflammatory-demyelinating-polyneuropathy-etiology-clinical-features-and-diagnosis

    • #117932
      Sean Burke
      Participant

      I was told I have the DADS variant today. Based on my blood results, further testing needs to be done to see if I have melanoma apparently.

    • #117933
      Tamme Cowan
      Participant

      I’m diagnosed with DADS Anti-MAG. After endless hours of research I found out about a Facebook group called Neuropathie Anti-MAG. It is composed of only people with this extremely rare condition from around the world. The best information and some awesome people. There are less than 100 people in the group. This is where you need to be. Collectively, you will learn what you need to know. If I can help further please let me know. Tamme

    • #117939
      Jim-LA
      Moderator

      I believe the group Tamme is referring to is here:
      https://www.facebook.com/groups/1592338124143555/?ref=bookmarks

    • #117940
      Sean Burke
      Participant

      Tamme & Jim, thank you so much. I will visit and try to join the group, as I need all the info I can get with regards to DADS.

Viewing 6 reply threads
  • You must be logged in to reply to this topic.